Life, Interrupted: The Patient in the Mirror

Today, I’m writing from a hospital bed in New York City. I’m in the bone marrow transplant unit, where this week I’ve undergone 20 intensive chemotherapy treatments in anticipation of receiving my brother’s stem cells. In the year since my diagnosis with leukemia, I’ve struggled to hold onto a sense of who I am while I watch the person in the mirror change.

Suleika Jaouad writes about the challenges faced by young adults and her experiences with cancer.

Looking back, I call the first month after my diagnosis “the cancer bubble” because I wasn’t showing obvious signs of my disease. I looked about the same — maybe a little more tired and pale than usual, but a stranger could never have guessed that I carried a secret, deep in my bones.

In the oncology ward, I still felt invisible, flying under the radar with my waist-length hair and the nose ring I got when I was 14. In the waiting room at my second appointment, a man with a sleeveless shirt and a bandanna covering his hairless head leaned in toward my father, who’s been bald since the ’80s, and raised his fist in the air: “Live strong, brother,” he said. Later, my dad and I had a good laugh about the mix-up — it helped ease our tight nerves for a moment. But I remember also feeling slighted, as though my terrible new disease wasn’t being acknowledged.

I remember my first day of chemo as if it were yesterday, hanging up my favorite summer dress like an athlete retiring a jersey. Within a few weeks, my waist had shrunk to a double zero — the size it was when I was in the sixth grade. My cheek bones jutting out. Rings under my eyes. Skin the color of chalk. And then there was my hair. My long, wavy hair — the same unruly locks I’d spent countless hours fussing over in front of a bathroom mirror — soon to be gone.

When I finally returned home after my five-week hospitalization, I could feel the stares of strangers on my bald head and thinning eyebrows. Everywhere I went, cancer spoke for me before I could say the first word. Once, I even overheard a child asking her mother why there was a boy in the girls’ bathroom.

Cancer had given me a reverse celebrity status: all the attention for something you didn’t want to be known for. I had crossed over into a new land, the land of Patient. And with every step I was feeling less like Suleika.

Now, here in the bone marrow unit, where I’m required to be in isolation to prevent infections, I’m surrounded 24/7 by the gaze of people who, first and foremost, are concerned with what I have — not necessarily who I am. Doctors in face masks stand over my hospital bed, peering down at me. Eyes and ties. And white lab coats. Voices without mouths discuss me as if I weren’t in the room. They give the Patient a hospital gown. The Patient is talked at, looked at, probed, prodded and whispered about. But after all, it’s their job to see me as Patient. The goal is to cure the Patient so she can return to being herself. But until then, it’s hard not to feel like just a body.

As Patient, you cede control of a lot of your life to others — to your nurses and doctors, to their decisions and schedules. I’m thankful for their care — where would I be without it? But anyone who’s been in the role of Patient can attest to the way it changes how you see yourself.

As I wait for my cure, I’m still a Patient. And while it’s been only a year, I can hardly remember what not being one is like.

Video

Life, Interrupted: A Family Gets Cancer

Suleika Jaouad was just starting her adult life when leukemia struck. Her diagnosis and her brother’s role as her bone marrow donor have affected her entire family.

Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 23-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, will appear weekly on Well. Follow @suleikajaouad on Twitter.